The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall...

詳細記述

保存先:
書誌詳細
出版年:Int J Environ Res Public Health
主要な著者: Ali, Salma R., Bryce, Jillian, Tan, Li En, Hiort, Olaf, Pereira, Alberto M., van den Akker, Erica L. T., Appelman-Dijkstra, Natasha M., Bertherat, Jerome, Cools, Martine, Dekkers, Olaf M., Kodra, Yllka, Persani, Luca, Smyth, Arelene, Smythe, Christopher, Taruscio, Domenica, Ahmed, S. Faisal
フォーマット: Artigo
言語:Inglês
出版事項: MDPI 2020
主題:
Review
オンライン･アクセス:https://ncbi.nlm.nih.gov/pmc/articles/PMC7727867/
https://ncbi.nlm.nih.gov/pubmed/33255540
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.3390/ijerph17238743
タグ: タグ追加
タグなし, このレコードへの初めてのタグを付けませんか!

類似資料